Summer reading: Looking at the stars

This summer we’ve been gripped by three books – all covering disability and brain injury from different perspectives.

Looking at the stars
This week’s book is Looking at the stars by 16-year-old Lewis Hine. We’ve covered Lewis before – he’s a very determined teenager who made it his mission to make sure every child has a friend through his charity Friend Finder. Lewis was diagnosed with a brain tumour as a baby and has had 13 brain surgeries since. He has over 30 seizures a week as his epilepsy is drug-resistant and he has a shunt that can require urgent attention. The book talks about Lewis’ childhood, school days and hospital stays, and how far he has progressed his charity in just a few years. His mum Emma has helped him every step of the way, along with his sisters and close family. Lewis received a grant from O2’s Go Think Big project, which helped propel his charity forward. The book also follows Lewis making contact with technology companies and looking at solutions that can really help children in hospital or at home stay in touch with their education or friendships. In 2016 Lewis won the BBC Radio 1 'Teen Hero of the Year', which was presented by Nick Grimshaw. More recently he won a 2018 NHS Heroes Awards taking the Special Recognition award. Great additions to the book are ‘My Top Tips for Life’ sections featuring at the end of several chapters. These snippets of practical advice, drawing on Lewis’ personal experiences, are helpful and inspiring. Likewise the ‘Day in the Life’ pieces show us the challenges Lewis and his family deal with. Another excellent part of the book is Lewis’ mum’s honest and open account at the end. There she explains how she handled Lewis’ diagnosis and life ever since. While the book blows the reader away with how much Lewis and his mum Emma have achieved, the personal advice takes Looking at the stars to another level. A remarkable essential read – we’ll leave you with some of Lewis and his mum’s advice: Lewis’ mum Emma: “You cope because you have to. Yes, you’re suffering the most horrific pain inside, but you have to be the strongest person on the outside to keep everyone else going. Lewis needed me to be strong for him, so I put my own fear and tears away and threw myself into being the best mum I could be, for him and my girls. I promised myself that I would give them the best life I could and that I would always support and be there for them, no matter what.” Emma continues: “There were days when I would lock myself in the bathroom and cry. I felt so guilty that my son had such a hard life. He was in constant pain and could only dream of doing what his sisters or other children did. Being a mum is amazing, but being the mum of a very poorly child is far more life-changing that normal parenting. With a healthy child, things get easier as they get older and start to look after themselves, but when your child has an illness, they don’t; things are hard every minute of the day.” The book also features Lewis’ speech from a video he made for his 16th birthday and shared on social media: “My name is Lewis Hine. I was born in 2001. At 17 months old, I was diagnosed with a brain tumour and it changed my life forever. I have had 13 brain surgeries to stay alive. I also have drug-resistant epilepsy and hydrocephalus and I have seizures most days. My life is a challenge. But one I am willing to accept. “People say I’m disabled as if it is a bad thing, but I say I’m lucky. I know what my challenges are. I never take anything for granted, I don’t feel sorry for myself, I use coping mechanisms to help me. In fact, I founded a project, Friend Finder, to help children who miss a lot of school come together to make friends. My project Friend Finder has now helped hundreds of children make friends. “Disability isn’t a bad thing, BUT keeping silent about it is! Today is my sixteenth birthday and I would like you to help me celebrate by sharing this video to show the world that it’s OK to be different. My illness may define the length of my life but it won’t define how I live it. My disability gave me the ability to understand and help others. And now I finally feel like I am living.” Lewis has a website, where his book can be purchased, and his charity Friend Finder is Twitter and Facebook. Lewis is also on Twitter. There is still time to watch Lewis’ CBBC documentary which featured in ’My Life’ (BBCiPlayer). This review is part of our Summer Reading series – Eye can write and Tell me the planets were also reviewed.   
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